Rehabilitation

Many people will scoff at the idea that rehabilitation of dementia patients is possible.  I think we can all agree that 'restoring' a person to their pre-dementia state is currently impossible and likely to remain so for a very long time.

In any case, recent publicity suggests that, even non-dementia conditions like brain injury and stroke where people are sometimes helped to regain and, in some cases, all of the abilities they have lost, those professionals who are 'caring' for them are sometimes untrained in the techniques of rehabilitation.  It seems that some people who could and should be rehabilitated are left alone, to decline further:

Secret filming highlights poor care of brain injury victims

So it's no wonder that those whose responsibility is to care for and treat people with dementia sometimes seem to do very little even to help ameliorate physical symptoms which may or may not be a direct result of the dementia.  I have been reading online accounts of carers who have removed their partners from care homes and achieved surprising physical improvements which are clearly good in themselves but which may also have a knock-on effect in terms of the dementia.

One such carer is writing a book about his experience.  He has 'before and after' photos which clearly show a dramatic improvements in his wife.  If he is able to find a publisher, his book deserves to be a best-seller.

The most widely read posts on Adventures with Dementia

I thought readers, particularly new ones, might find this list useful:

Cameron: 'It's a disease!'

More about HSV1 and beta amyloid

More about the possible relationship between the Herpes Virus and Altzheimer's Disease

A Herpes Vaccine may help

Now this could be a bit of a breakthrough

A convincing case against statins?

The link below will take you to a very interesting website. Scroll down and then download the 'fact sheet 1'. The other resources will also give you food for thought:

Statin Nation

Are statins being overprescribed?

I was shocked to be told by a pharmacist that there's an 'unwritten principle' that everyone over 60 should be put on statins.  I know that statins have a number of possible side-effects, including memory loss (as I've mentioned previously).

A few days after my conversation with the pharmacist, I read this article:

http://www.theguardian.com/lifeandstyle/2013/oct/22/butter-cheese-saturated-fat-heart-specialist

For those who may not have time to read the article, this extract will give you a flavour:

"In the UK eight million people take statins regularly, up from five million 10 years ago," he writes. "With 60 million statin prescriptions a year, it is difficult to demonstrate any additional effect of statins on reduced cardiovascular mortality over the effects of the decline in smoking and primary angioplasty [a technique used by doctors to widen the arteries].

In the original trials carried out by drug firms, only one in 10,000 patients given statins suffered a minor side-effect. But among 150,000 patients in a "real world" study – people who had been routinely given statins by their GP – 20% had side-effects that were so unacceptable to them that they stopped taking the pills, including muscle pains, stomach upsets, sleep and memory disturbance, and erectile dysfunction."

Naturally the medical and pharmaceutical establishment disagree, but it's possible that the tide is starting to turn in favour of a more cautious approach to the prescription of 'statins for all'.

Oct 28th:  I'm adding to this post because I have learned that the British Medical Journal has come out against 'statins for all' (in this case, all over 50).  This article seems to me to explain the debate very clearly:

http://www.bmj.com/content/347/bmj.f6412

'Robotic' but useful behaviour

My wife sometimes behaves like a robot.  And I'm glad she does.

For example, we live in a Victorian house with steep stairs and no downstairs loo. We've had an extra handrail fitted and she manages the stairs pretty well.  I always set off down the stairs and remind her to follow me down.  Every so often, I realise after a couple of steps that she isn't following.  Invariably I find that her clothing has caught on the new narrow handrail.

Now what would be even better would be if she could tell me about the problem but, failing that, this seems to be the next best thing and it reminds me so much of video you see of robots encountering obstacles.

Similarly, she sometimes sits down unexpectedly, when we are out walking.  Sometimes because she is tired or because I'm hurrying her (which is always best avoided).  But she always sits down very, very carefully and seldom comes to any harm, much as a robot might be expected to do.

I don't know whether other people with dementia do this, but I'm glad she does.

Medication frustration

There's a post today from the Alzheimer's Society: http://forum.alzheimers.org.uk/showthread.php?63405-Statin-found-to-prevent-memory-problems-caused-by-surgery

Apparently, the commonly prescribed statin, atorvastatin, has been found to reduce inflammation in the brain that occurs after surgery in mice, which can lead to post-operative decline and Alzheimer’s disease.

This could be good news.

But if you google 'statins' you'll find that these drugs, which are prescribed on a massive scale, are possibly implicated in the development of 'memory problems' and everyone knows that memory problems are often the first sign of the onset of dementia. It's a bit like the way in which some drugs which are presribed for a particular condition, include that very condition (as well as many other unpleasant symptoms) amongst their possible side-effects.

 What are we to think?

Nuns study yet again

I keep discovering that people who should know better are apparently unaware of the Nuns Study:

http://adventureswithdementia.blogspot.co.uk/search?q=study

You would think that such dramatic and unexpected findings would have had a massive impact on the direction of research.

Another care system disgrace

This could almost be a continuation of the last post.

The Leonard Cheshire Disability Charity have today done all of us a great service by drawing attention to the fact that a large proportion of all visits to the housebound (many of whom have dementia) by paid carers, funded by Local Authorities, last no longer than 15 minutes.

In fact, it's become clear during the day that in some cases it's even worse than that. As some companies do not reimburse staff for time spent travelling between jobs, many '15 minute' visits are in fact even shorter.

To put it starkly, vulnerable and helpless people who are dependent on these care visits, are often having to choose between being fed or being toileted.

Yet there are some Local Authorities who refuse to fund care visits lasting less than 30 minutes.  So it is possible to have a sane system.

The really depressing thing is that I would be willing to bet that the situation will be exactly the same in a year's time

People who never go outside

A topic raised by this article:

http://www.itv.com/news/2013-09-03/my-name-is-philip-and-i-have-dementia/

Some of the reasons why people don't get out are suggested in this article.  But it's not, of course, a problem that's confined to people with dementia.  Many elderly people are reluctant, or feel unable, to go out.

There are some schemes  -  such as 'Good Neighbours'  -  which involve, amongst other things, volunteers visiting people like this and taking them out.  Clearly, there should be a much greater effort to ensure that no-one feels trapped in their house.

Cameron used to promote the 'Big Society', a concept which encompassed schemes like these.

I don't think the words 'Big Society' have passed his lips for a long time though.

Sad.

Unpleasant for everyone

Dealing with dementia often throws up examples of things that are not difficult just for people with dementia but for most other people as well.

A good example is mammography.

I took my wife to her last screening. The claustrophobic cupboard in which you undressed was right next to the screening room. I could hear that they were having trouble getting my wife to leave her breast in the clamp - she naturally moved away as it started to hurt.

They brought her back to the cupboard and said that they had only been able to complete two of the four scans. They said that they only had four minutes for each patient (for four scans)! I was surprised how red her breasts were. I should say that, normally, even since the dementia, she is very stoical about medical procedures that cause 'discomfort' (otherwise known as pain).

She was referred elsewhere, to a clinic where they had a bit more time and were able to complete scans to their satisfaction.

You wouldn't need to have dementia to find this procedure unpleasant.

Leave aside the valid debate about whether, overall, mass screening saves lives or loses them, there must be a better way of doing this.

Alzheimer Research Forum

http://www.alzforum.org

Another heads up about this excellent, though very complex and technical, site.  Just scanning through the comments you can discover some interesting thoughts:

These are puzzling cases indeed. Do these patients have ALS or a different clinical presentation of SCA2? How should we classify such patients? Intermediate repeat expansions have been identified as a genetic risk factor for ALS, while true (longer) expansions are encountered in rare sporadic and familial ALS cases and probably should be considered as a rare true cause of ALS. Thus, disease presentations of SCA and ALS within the same family are possible. That tallies with the concept that ALS is a clinical syndrome with heterogeneous etiologies, rather than a distinct disease entity.

Another milestone for the blog

The number of page views during the life of the blog has just passed 20,000.  I know of course that blogs about cup cake recipes and fashion accessories for pets probably get more page views in a month, but I'm very grateful to all our readers across the world for taking the trouble to have a look at my musings.

Thanks also to those who have left comments and become members.

I always hope to start posting more regularly, but this is very dependent on circumstances.  In some ways, looking after S has become less demanding since I started the blog but there are still times when significant pieces in the support jigsaw that enables me to have some time to myself become less available, for unavoidable reasons.

As well as being featured on Mumsnet and Gransnet as a guest blog, AWD can also be found on loveallblogs and talk health.

Now this could be a bit of a breakthrough

The latest Alzheimer Research Newsletter:
http://www.alzforum.org/
contains a fascinating account of research which has found that some people who appear to have Alzheimer's symptoms do not have the biomarkers indicating the presence of amyloid deposits (plaques) which most people with these symptoms do have.

Regular readers of this blog will know that there seems to be a growing scepticism amongst researchers about the almost universally promoted view that the build up of these plaques in the brain constitutes 'the cause' of the disease.

There is also recently reported research which suggests that some of those with the symptoms but not the plaques tend to have a type of dementia that progresses significantly more slowly than the AD which people with symptoms and plaques have.

The question arises: do these groups of people even have the same disease?

As usual, the reports on this site are quite technical.  If anyone can explain these finding more clearly. they are more than welcome to comment.

I have posted prviously about the nuns study
http://adventureswithdementia.blogspot.co.uk/2012/10/possibly-most-exciting-research-into.html

The research discusssed above might begin to explain why some nuns whose brains post-mortem showed no sign of deposits had all the symptoms of AD.  I still await with interest any explanation as to why some nuns had significant deposits but were not, whilst alive, dementia sufferers.

Spread the awareness

The link below will explain how you can help your MP to become more dementia aware.  You can send a proforma letter (which you can edit/personalise if you wish) inviting your MP to a meeting at Westminster.  It will only take you a couple of minutes.
http://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=1747

Care workers on zero-hours contracts

It's interesting to learn from the current, and fully justified, campaign against the use of zero-hours contracts that thousands of care workers are on zero-hours contracts.

Could there, I wonder, possibly be any connection between this fact and the often-expressed view that the service provided by organisations that provide care for profit is not always acceptable?

(The many readers of this blog who aren't UK-based may not be aware of this controversy.   It is becoming clear that hundreds of thousands of people 'employed' in the UK, some of them by very well-known companies, are on 'zero-hours contracts'.  This means that they are not guaranteed any work and do not have the same employment rights as other workers.  Yet some of the companies actually forbid them to take any other employment while they are 'contracted'.)

Dementia rates in the UK falling????

I was on holiday when this story broke.  If you google it you'll find it's reported in several places.

I haven't seen any comments on it  -  very odd, as we have been bombarded for several years with the opposite message.

I'd be interested in any views. I notice that it seems to concern dementias in the elderly exclusively. Some people believe there has been a dramatic increase in the incidence of young onset dementias, though I have not seen firm evidence on this.

A truly horrifying death

In May, the story of the death of Gloria Foster, an elderly woman with advanced dementia who was left to die in her own home, shocked the nation.

After the initial expressions of shock and outrage, things went quiet.  The media moved on as usual.  Later, a police investigation found no evidence of any criminal neglect.  This caused a ripple of surprise, and then the story disappeared again.

Thankfully, one journalist, Amelia Gentleman of the Guardian, did not 'move on'.  Her investigation into how it is possible in twenty-first century Britain, for a woman to die at home, alone, without food, water or medication deserves to be widely read.

Every policy or plan to deal with the coming explosion in the number of frail, elderly people who will need to be looked after should be judged against this criterion: would it help to ensure that in future no-one else has to face the ordeal that Gloria did.

And, of course, somebody should be called to account.  Soon!

http://www.guardian.co.uk/society/2013/jun/29/when-elderly-care-goes-wrong

An astonishing fact

The Alzheimer's Society has called on George Osborne to use the Comprehensive Spending Review to fund greater access to care for tens of thousands of people with dementia.

This is long overdue.

But what struck me most was this astonishing fact:

'a quarter of people in hospital have dementia'

Is it any wonder that so many hospitals are struggling to cope, not only with the 25% of patients who have dementia but also with the rest?

The importance of expectations

I have come to believe that the expectations that carers (family or paid care workers) have of people with dementia could be very important.

Some approaches to the care and treatment of people with dementia emphasise the need to convince people with dementia that they do not need to concern themselves in any way with anything at all.  Carers are advised, for example, never ever to ask direct questions and never ever to contradict.

This advice is sometimes presented regardless of where the person is on their dementia journey.  They could be at a very early point, recently diagnosed and still working.  It doesn't seem to matter.

This is a key aspect of what is sometimes referred to as 'compassionate communication'.  It might better be called the 'Don't worry your pretty little head about a thing' approach.

But it could be that this advice is not always in the best interest of people with dementia, even those like S who can do very little for herself.  I have always asked her direct questions and continue to do so.  Sometimes the questions have to be repeated, but if she understands the question she is usually capable of answering rationally.  If I had stopped asking her questions when it was clear that she had dementia symptoms, would she have been able to respond to questions years later?  I would not have known, and neither would anyone else.  But I suspect that, as in so many other cases, it comes down to 'use it or lose it'. I am not making any criticism of any carer who has realised that the person they are caring for is no longer capable of responding to questions.  Of course, anyone would eventually stop asking questions in this situation.

People sometimes find that when the person they care for goes into a care home or, worse, into hospital, there is a dramatic decline in their state of mind and their awareness.  There could be any number of reasons for this but perhaps one reason might be the absence of expectations or, indeed, unrealistic expectations, on the part of the staff.  We might surmise that the latter case is rarer.

The behaviour of people who do not have dementia is greatly influenced by the expectations of other people.  I think there are good reasons for believing that that people with dementia share this characteristic, though clearly it will almost certainly diminish as the disease progresses.

The stages of dementia

I'm increasingly dubious about the 'Stages of Dementia'.  The idea is that the condition can be broken down into stages.  Typically each stage is allocated a list of symptoms.  You check your cared for person's symptoms against a stage and then you know what stage they are at. Simples!

Except that when you speak to other carers or read what they have written you find that often people have a cluster of symptoms which might well include a few from each stage.  If you raise this with a 'true believer' in the stages, they will tell you that you should only view the stages as a rough guide.

It's actually very, very rough.  It seems to take no account of the fact that there are so many different kinds of  dementia  -  possibly as many as there are people with dementia.

And I worry that if a carer is led to believe that the person cared for is in the 'late stages', they will treat them accordingly and this may become a self-fulfilling prophecy.

It's also interesting to me that there are a number of different versions of the stages floating about.  And that they all seem to be based around odd numbers  -  3 stages, 5 stages, 7 stages, never, you notice, around even numbers.  It reminds me of the magical numbers of myths and fairy stories.

Diagnosis and possible prevention

This recent article is interesting:
http://www.bbc.co.uk/news/health-22531066

I have reservations about the current emphasis on the need for early diagnosis and I've discussed them before (type 'diagnosis' into the search box at the top left if you're interested).

Leaving these views to one side, it interests me that the article clearly suggests that diagnosis is a more complicated matter than we are sometimes led to believe:

'The National Clinical Director for Dementia in England, Prof Alistair Burns, says the MoCa test could be an important component in identifying risk of vascular dementia, but he says by itself it is just a "snapshot", and a lot of other factors should be brought to bear in arriving at a diagnosis.

"It's not just one thing. It's looking at the history of the person, it's looking at how they are doing in general, it's looking at the medical history, at brain scans, and that test of cognition, of executive function."

However he says the message about the possibility of prevention is important.'

The possibility of prevention is another interesting topic about which there are few clear-cut answers. Since vascular dementia was first identified it has been clear that lifestyles which minimise the risk of heart disease or stroke might help to prevent vascular dementia as well. But there are several different kinds of vascular dementia and many, many more kinds of dementia that don't seem to have any connection with the vascular system. It's important that people understand this.

Dementia Awareness Week

It's currently this week (ends tomorrow) in the UK.

Mumsnet invited me to do a special guest blog to mark the occasion.  You can find it here:

Mumsnet guest blog

(The previous link was only good for a day. Apologies.)

Regular readers will see that I've covered several familiar points, but it nay be useful as a starting point for new readers.

Please consider signing this petition

I'm never sure myself whether it's really worth signing online petitions, and there are so many on this topic that they are probably in danger of competing and cancelling each other out. However.........

The demand is for free care for people who need it, for whatever reason.  Obviously I'm coming at it from the point of view of someone who cares for a person with dementia but there are many other conditions and diseases that lead to people reaching a point where, if someone doesn't look after them, they will die.

Currently in the UK, you have to pay for this care, unless your income/savings are below a certain point.  Care, provided either in a home or 'at home' is incredibly expensive and sometimes not of a very high standard.  It is generally provided by private companies, though there are a few charities who also run homes.  If you are below the income/savings threshold, the Local Authority usually pay a lower fee than the care hones charge 'self-funders'.  Indeed there are grounds for believing that the companies subsidise the Local Authority places via the higher self-funding costs.

There are plans, currently due to come in during 2016, for a different system which might help to ensure that people don't necessarily lose all their savings and sometimes their home in care fees. It is a rather complex scheme!

The petition calls for everyone to be treated equally.

As always, the question is where the money will come from to meet this demand.  We would all have different ideas about this, but I think most people know that the way wealth is currently distributed suggests that there are many better choices that could be made in terms of tax and spending.

If you want to read more about this particular petition, follow this link:

Care of the elderly without bias

Thatcher's dementia

People who have a particular interest in dementia, e,g, carers, will have noticed how reticent the media have been in mentioning, never mind discussing, Margaret Thatcher's dementia.  Indeed, the fact that she had dementia was only really confirmed publicly when her daughter Carol wrote about it in a memoir published in 2008.

Even those newspapers and broadcast media that have mentioned the word have generally failed to explain it to a public, many of whom are not particularly well-informed about it.  Even those who have gone into a little detail have reported people's surprise that, even in the last months of her life, she was capable of lucid moments.

But this is not particularly uncommon, especially if people have vascular dementia which it would appear that Thatcher had: she had a series of mini-strokes which led to her withdrawing from public life.  However, in amongst all the various facts, some of them extremely trivial, which the mainstream media have been so keen to throw us, you won't find many mentions or descriptions of vascular dementia.

One could just about understand a reluctance to publicise her condition whilst she was still alive.  Unlike Terry Pratchett, who has seen it as a responsibility to 'spread the word', Thatcher and her supporters were generally silent about her condition.  But once she had died, there would seem no reason not to discuss it.

What is really needed is a massive public campaign to explain dementia, and what it actually means, to the general public.  Here was an excellent opportunity to inform: an opportunity spectacularly thrown away.

Generalisations about people with dementia

You find them all over the internet.  Even when people pay lip service to the idea that 'everyone is different', they frequently state, suggest or imply that 'they' do this, can't do that, feel this, must be treated like this, cannot understand that....

The absurd thing is that those who make these statements will themselves often only have experience of two or three people with dementia.  Either they are thoughtlessly extrapolating from this miniscule sample or, more likely, they're just repeating what they have read or been told by other equally misguided people.

I've mentioned before a couple of totally false assertions:

http://adventureswithdementia.blogspot.co.uk/2012/08/are-people-with-dementia-capable-of-new.html

http://adventureswithdementia.blogspot.co.uk/2012/05/if-i-hear-anyone-else-talking-about.html

Statements like this also ignore that the fact that people are often diagnosed at very different stages of whatever type of dementia they have (and some people claim that there are over 200).  Many people in the early stages of the diseases will be able to do nearly all the things that people without dementia can do.  Indeed, they may be able to do some of them better than most people without dementia.  The writer Terry Pratchett is a well-known example.  Several years after diagnosis, he is still writing books.  Likewise, the singer Glen Campbell was able to produce a very polished album post-diagnosis.

For every celebrity, there will be thousands of other people who are still functioning 'normally' in some or many respects.  People are still working, driving, and living independently.

I would advise people who want to try to understand the world of dementia to ignore any statement that lumps people together in the way that I've illustrated.

I'm not of course, denying that many people with dementia can have some things in common, just like people without dementia can.  It's the absence of qualifiers  -  some, many, most  -  that gives the game away.

It's just sloppy thinking  -  on a par with talk of 'the poor' or 'the unemployed'  -  and often from people who should know better.

What people with dementia really want

People with dementia and their family carers say (National Dementia Declaration) that they want to see the following outcomes in their lives:
I have personal choice and control or influence over decisions about me
I know that services are designed around me and my needs
I have support that helps me live my life
I have the knowledge and know-how to get what I need
I live in an enabling and supportive environment where I feel valued and understood
I have a sense of belonging and of being a valued part of family, community and civic life
I know there is research going on which delivers a better life for me now and hope for the future. 

If you really accept this, then much of what passes as advice to people who care for people with dementia is seen to be deeply flawed.

Is this inevitable?

On an online forum, someone who, along with other family members, is looking after Mum who has dementia, is asking whether it is inevitable that she will cease to recognise them at some stage.

My thoughts are that almost nothing is inevitable, except death - and the person we are caring for might die today, as might we.

I've always been a bit anxious so if I allow myself I can think of any number of horrific scenarios. You don't even need to imagine them these days, you can if you wish read blow-by-blow accounts of carers' experiences in real time.

What we have to try and do is, as people keep repeating, to live in the moment, like so many of the people we're caring for do.

I actually find the thought that everyone is different and everything is unpredictable a consolation.  How would anyone cope if all people with dementia followed exactly the same path, on the same sort of timetable, via a series of known and minutely documented horrors towards their extinction?

And, by the way, it certainly isn't inevitable that Mum will fail to recognise her family.

Cameron: 'It's a disease!'

An extract from yesterday's Hansard: 

Tracey Crouch (Chatham and Aylesford) (Con):
Figures published yesterday show that over the past 20 years there has been a 137% increase in the number of deaths linked to Alzheimer’s disease. Does the Prime Minister agree that if we are to stop that awful condition from afflicting more people in the future, we must invest much more in preventing it and on research in particular? Will he outline to the House what the Government are doing to help support those with dementia and those who care for them?

The Prime Minister:
My hon. Friend raises a point of concern to everyone in this House and everyone in this country, because no one knows when a relative could be afflicted by the condition. Her point is absolutely right: this is a disease and we should be thinking about it as a disease, as we do when we try to crack cancer, or heart disease, or strokes. That is why the Government are increasing the amount of money going into medical research so that we can try to prevent dementia in more cases. But there are many other things we need to do to improve the care in care homes and in hospitals and to ensure that we have more dementia-friendly communities so that we all learn how to deal with people who have dementia and how to help them lead lives that are as productive as possible.

This is very interesting.  First, Cameron is stating publicly that 'it' is a disease and comparing it with cancer heart disease and stroke.  Millions agree (the clue is in the name: Altzheimer's Disease).  But it isn't treated like these other diseases either in the way that people with the disease are cared for (their treatment is not 'free at the point of use') or in terms of the amount spent on research (the modest increase in no way reflects the scale or impact of the disease).

It will be fascinating to see whether he stands by this statement, actions speaking louder than words.

I'm inclined to think that it's just the usual PR.  As a politician he makes a fine PR man. 

But at least now these words are on record and there's something to try and hold him, and others, to.

Follow this link for a more recent comment on Cameron's views on dementia:

http://adventureswithdementia.blogspot.co.uk/2014/07/comments-on-camerons-latest-speech.html

Looks like a great resource for HSV1 and Alzheimer's

I recently came across this:

http://www.alzforum.org/res/for/journal/detail.asp?liveID=188

It interests me greatly and not just because there is a lot of detail (I've barely scratched the surface) about the link between herpes simplex and Alzheimer's (a link that was first looked at in the 1970's).  I'm also intrigued that what is clearly a reputable Alzheimer's Research site is taking the growing body of research in this area seriously.

I simply cannot understand why the comparable bodies in the UK are neglecting this research.  I think it's scandalous.

Sonas - Irish word meaning well-being, joy and contentment

Also the name given to a sensory stimulation programme.

S was offered a place on a Sonas course.  As the day of the week on which it takes place is one when we have the care worker visiting to sit with S for a few hours, I asked her if she would like to go with S.  She readily agreed even though this meant adjusting her time of arrival.

I thought it would be interesting for S to go to an activity with someone else.  The downside of this is that I don't have a clear idea of what goes on.  However I offered to go and collect S at the end of the session as the care worker lives near the venue and could then go straight home.

The session was winding down when I arrived.  I could see S was quite happy, as she mostly is these days.  Two things slightly disturbed me however.  All the other participants were clearly quite old.  We are used to this, to an extent, as S is still relatively young at 63 and a large majority of people with dementia are a good deal older.  But usually there's a handful of younger people at the activities we attend.  I'm not sure whether this bothers S though the songs they were singing along to at the end were all old songs and I doubt whether she would have known more than one or two.

The other thing was that, from my brief sample of the session, the prevailing attitude towards the participants might have been a little patronising.  I am now quite sensitive to this since I realised how easy it is to get into the habit of treating someone with dementia as a child:

This struck a chord

Neither of these reservations make me at all question the potential value of the approach which involves stimulating all the senses in a programmed way.  The care worker said that S really enjoyed it though she did find some of the activities difficult (which she does at most of the sessions we attend).  So I'm still hopeful that there will be benefits beyond the enjoyment (which is obviously good in itself).

I would be happy to hear from anyone with experience of Sonas.

This is what we have sunk to

I'm amazed that this story has not been given greater exposure:

No food, no water, no medication - left to die in her own home

What this appears to tell us that in the UK in 2012, it's more important to crack down on allegedly illegal immigrants than to keep an elderly woman, who is paying for her own 'care', alive. What she must have gone through doesn't bear thinking about.

I am aware from reading online forums that there are many elderly confused people (often actually suffering from dementia) in the same situation, totally dependent on carers and with minimal, if any, contact with family.

As a British politician once said: 'I warn you not to grow old.'

Guess what? Type 2 diabetes now.

It hardly surprises me now to find associations between the commonest herpes virus HSV1 and common diseases.  Here's a link to research that investigated HSV1 and type 2 diabetes:

An association of HSV1 with type 2 diabetes

This research concludes:

A significant association of HSV-1 infection with type 2 diabetes was found in the present study.

Again, particularly interesting for me is that type 2 diabetes can have an impact on cognitive function.  See this link (and others via google):

http://www.tandfonline.com/doi/abs/10.1080/13803390490514875

It's important to note that as yet I haven't read anything suggesting a direct link between the virus and the cognitive impairment that can occur in type 2 diabetes so the link with the virus may not be as direct as it is in the other diseases I've blogged about .

Bipolar also. What next?

Further searching has revealed a link between HV1 (the commonest herpes virus) and bipolar:

Infection with herpes simplex virus type 1 is associated with cognitive deficits in bipolar disorder

This is the conclusion of the article:

Serologic evidence of herpes simplex virus type 1 infection is associated with cognitive impairment in individuals with bipolar disorder.

So now I have found research linking this virus with cognitive impairment in Alzheimer's, schizophrenia and bipolar.

Surely, research into what this virus is capable of needs to be drastically escalated.

In the meantime, why isn't the comparatively safe and cheap anti-viral drug aciclovir prescribed to try and halt the cognitive impairment in all these diseases? 

Herpes, Alzheimer's and schizophrenia - yes!

I was reading about schizophrenia, prompted by an article about a young girl diagnosed with it.  Her hallucinations were described and I couldn't help noticing similarities between her symptoms and S's.

Further searches appeared to suggest possible links with Alzheimer's and dementia more generally.  It's clear that in schizophrenia, whilst the psychotic symptoms predominate (they're actually referred to as positive symptoms), there are also less prominent symptoms of cognitive deficits which closely resemble those of dementia. 

These include the loss of concentration skills, memory, coordinated movement and dexterity.  And these are associated with the same kind of brain shrinkage, in the same regions of the brain, as is found in patients with dementia.

The next obvious step was to google herpes and schizophrenia.  By now, I wasn't surprised to get a large number of interesting results.

Cold sore virus and schizophrenia

You really should read the article  -  it's not too long  -  but this extract is so similar to statements I've read about herpes and dementia:

"We're finding that some portion of cognitive impairment usually blamed solely on the disease of schizophrenia might actually be a combination of schizophrenia and prior exposure to herpes simplex virus 1 infection, which reproduces in the brain," says study leader David J. Schretlen, Ph.D., an associate professor in the Department of Psychiatry at Johns Hopkins University School of Medicine.

The research, described in the May Schizophrenia Research, could lead to new ways to treat or prevent the cognitive impairment that typically accompanies this mental illness, including with antiviral drugs, the scientists say.

Citation: Disabled World News (2010-05-29) - Cold sore virus may contribute to cognitive and brain abnormalities in schizophrenia: http://www.disabled-world.com/health/dermatology/herpes/herpes-schizophrenia.php#ixzz2IVFFwy6X

I need to think about all this and to do some further searching.  But clearly HV1 is an even more ubiquitous and harmful virus than most people think.

e-petition about a scandalous situation

The petition here:

http://epetitions.direct.gov.uk/petitions/44333

was recently started and is an attempt to get dementia considered as a disease (rather than something that just happens to  -  mostly  -  old people).  The importance of this is that, unlike other terminal diseases, it does not entitle the patient to free NHS care.

There is a currently a complex system via which certain cases can be considered for some NHS funding but people find that this is mainly an obstacle course that deters all but the most determined (and carers have one or two other things to concentrate on).  If you do get some funding you stand a good chance of having it taken away after a couple of months.

You may have heard of the 'Dilnot' proposal whereby, at some stage in the future, patients may only have to spend 'only' £35,000 or, more likely, £75,000 of their money on their own treatment!

Please consider signing the petition.  Remember no-one of whatever age can know when they or a loved one may be struck by one of the diseases that causes dementia.

If the petition attracts 100,000 signatures, the issue can then be considered for debate in parliament.

Another milestone

The total number of page views of this blog has just passed 10,000.  I just wanted to thank all those who have taken the time to read what I've written.  The blog has become increasingly important to me, both as way of sharing my thoughts and feelings with others, and also because the feedback I get suggests that people find it interesting and useful.

Thanks to the wonders of the internet I'm able to tell you that, although understandably the views are mostly from people in the UK, there is also a significant readership in the US.  Russia and Canada are represented next in the 'league table' with a surprisingly large number of countries also featuring.  I guess dementia fascinates and appals people the world over.

Thanks again to all of you.

Sometimes it's the little things that drive you mad

Twice today, ironically because we've had a nice weekend with one of my sons and his wife, I was quite relaxed and not quite as 'on the ball' as I usually force myself to be  So after handing S a drink I watched her start it and then carried on lighting the fire.  She then tried to put the drink down and, as so often, she managed to put it down on top of something else.  I heard it roll over and fall onto the carpet.

That meant quite a clean up, though as it had fallen onto a rather grubby bit of carpet I at least had the consolation of feeling that this was something I would probably have had to do in the near future.

But how to explain that I did a very similar thing a few hours later!  This time I left S, sitting down at the table, with a drink of fruit juice.  This is usually a bit safer, but you'd think I would have kept an eye on S until the glass was empty in view of the earlier spill.

Anyway, whilst I was happily getting on with the washing-up, S was busily walking up and down the hall carrying the half full glass of fruit juice at an angle that meant that most of it ended up on the wooden floor.  This was rather more annoying as I knew it would be much more difficult to clean up.  Though I know there's no point I did briefly remonstrate with S before remembering that there's no point.  This didn't help, though in the past I would have been much more obviously annoyed and frustrated and she would have been much more agitated.   So that's something positive I suppose.

Another herpes virus (CMV) has been found in the brains of 93% of people with Vascular Dementia

These herpes viruses cause a wide range of problems.

The article mentioned in this link dates from 2002  -  2002, for God's sake.  Any progress since?

http://www.sciencedirect.com/science/article/pii/S0969996101904656

You may wonder why this fact is not more widely known and why there has not been much research into the relationship between CMV and VD.

There is great hostility to this kind of research.  This may be because research tends to be funded by 'big pharma'.  Why would they be interested in a treatment that involved a cheap and widely available anti-viral drug?